Controversy infects Lyme Disease treatment, diagnosis

Published 1:29 pm, Monday, August 31, 2009

Even now, 13 years after she was infected, Phyllis Esposito-Doyen still experiences flare-ups of her Lyme disease.

"It's a chronic thing, it never goes away,'' the Stratford woman said.

"For some reason it gets worse around the change of seasons.'' But along with the symptoms -- the sore joints, the fever and fatigue -- Esposito-Doyen and other Lyme patients are battling a perception that the disease is an acute illness that goes away completely with treatment.

"It seems to be a political issue right now, centered on cost control,'' said patient Bonnie Friedman of Trumbull. "The infectious disease doctors that put together the treatment guidelines have interests in other areas, including the insurance companies.''

The settlement reached required the IDSA to form a new panel, free of conflicts and willing to consider all of the available scientific evidence. The current guidelines do not call for treating Lyme disease with antibiotics for more than a few weeks, and recommend against using vitamin supplements and alternative treatments.

Friedman, who is the office manager for Dr. Charles Ray Jones of New Haven, said doctors who specialize in treating Lyme disease, like Jones, were specifically barred from serving on the new panel.

Jones was sanctioned by the Connecticut Medical Examining Board in December 2007 for violating the applicable standard of care. The pediatrician allegedly prescribed antibiotics for two Nevada children without seeing them, and diagnosing Lyme disease based on their mother's description over the phone.

The sanction and the two-year license probation and $10,000 fine that accompanied it were later stayed by a court order.

A legal defense fund has been started to help the 81-year-old doctor pay for the ongoing appeal. Visitors to his Park Street office are invited to contribute by signs on the counter and in the waiting room, and several Web sites also solicit donations on his behalf.

A new state law that took effect July 1 ensures that doctors who prescribe long-term treatment for Lyme disease cannot be censured by the Connecticut Medical Examining Board solely for that reason.

The law will be a "relief'' to families who are sometimes forced to seek treatment out of state, said Maggie Shaw, head of the Newtown Lyme disease Task Force. It will also encourage more physicians knowledgeable about Lyme disease to practice here, Shaw said in a prepared statement.

But the debate over whether the tick-borne illness is a chronic one or one that can be cured quickly and completely is likely to rage on.

"This is a very controversial issue,'' said Dr. Zane Saul, chief of the infectious disease department at Bridgeport Hospital. "What we know about Lyme disease for sure is that 21 days of antibiotics cures it in the early phase.'' But in those cases where the disease is not caught early -- only 50 percent get the telltale "bullseye'' rash -- there are no guidelines for how long therapy can continue, he said.

"Yes, the insurance companies do get in the way,'' Saul said. "But in Connecticut the attorney general has gotten laws through that allow doctors to treat the disease longer if necessary.'' Esposito-Doyen and her two daughters were all on intravenous antibiotics for nearly six months in 1996.

"I only finished paying the bill a few years ago,'' she said. "My co-pay was $4,000 a month for each of us. I had to decide which of us to get treated first.'' One of Esposito-Doyen's daughters developed heart problems from the disease -- a rare but serious side-effect. But long-term antibiotic treatment can also be harmful to the body, especially to the kidneys and gallbladder, doctors and advocates said.

"Not everybody has a chronic, debilitating illness from Lyme,'' Saul said. "But I personally have seen people whose lives were devastated by it.''

Cases increase in warm weather, as people and pets spend more time outdoors and are more susceptible to tick bites. "It's been a busy season for far; I saw 12 patients just today with Lyme,'' Saul said last week.

Complicating the diagnosis is the fact that Lyme disease can mimic other illnesses, including the flu. This year, with the swine flu outbreak and the damp, cool spring, some people may mistake a new case of Lyme for the flu, health professionals said.

Esposito-Doyen, who has remained active in area Lyme disease support groups, said members are concerned that many Lyme patients also suffer from fibermyalgia and chronic fatigue syndrome.

"The latest thing they are linking it to is MS,'' she said. "That is pretty scary to think about.'' Saul said there are similar patterns between Lyme disease and Multiple Sclerosis, "but one doesn't cause the other.''

The tiny deer tick carries the bacterium responsible for Lyme disease and several related illnesses, including babeosis and Rocky Mountain spotted fever. Attempts to cull the state's rising deer population through increased hunting have often been controversial, including a pending proposal in Fairfield.

"Ticks are a cesspool of infection, and they carry bacteria that can cause more than one thing,'' said Friedman of Trumbull. "You often see co-infections from the same tick bite.''

The disease and its treatment is also the subject of an award-winning documentary, "Under Our Skin.'' Filmmaker Andy Wilson attended screenings last week in New Haven and Stamford. Although Wilson's film, which features Jones and several Connecticut residents, makes a case for medical neglect of Lyme patients, Saul of Bridgeport Hospital said excellent care is available here.

"First, be sure that you have it,'' the doctor said. "Seek treatment as soon as possible and trust the provider you pick.''